Technological developments enable measuring and using patient-reported outcomes data in orthopaedic clinical practice

Patient-reported outcomes measures form the backbone of outcomes evaluation in orthopaedics, with most of the literature now relying on these scoring tools to measure change in patient health status. This patient-reported information is increasingly collected routinely by orthopaedic providers but use of the data is typically restricted to academic research. Developments in electronic data capture and the outcome tools themselves now allow use of this data as part of the clinical consultation. This review evaluates the role of patient reported outcomes data as a tool to enhance daily orthopaedic clinical practice, and documents how develop-ments in electronic outcome measures, computer-adaptive questionnaire design and instant graphical display of questionnaire can facilitate enhanced patient-clinician shared decision making.     

Unstated factors in orthopaedic decision-making: a qualitative study

Background  

Total joint replacement (TJR) of the hip or knee for osteoarthritis is among the most common elective surgical procedures. There is some inequity in provision of TJR. How decisions are made about who will have surgery may contribute to disparities in provision. The model of shared decision-making between patients and clinicians is advocated as an ideal by national bodies and guidelines. However, we do not know what happens within orthopaedic practice and whether this reflects the shared model. Our study examined how decisions are made about TJR in orthopaedic consultations.     

Enhanced recovery pathways and patient-reported outcome measures in gynaecological oncology

Comprehensive peri-operative care for women with gynaecological malignancy is essential to ensure optimal clinical outcomes and maximise patient experience through the continuum of care. Implementation of peri-operative enhanced recovery pathways in gynaecological oncology have been repeatedly shown to improve postoperative recovery, decrease complications and reduce healthcare costs. With increasing emphasis being placed on patient-centred care in the current healthcare environment, incorporation of patient-reported outcome data collection and analysis within the enhanced recovery pathway as part of quality measurement is not only useful, but necessary. Inclusion of patient-reported outcome enhanced recovery pathway evaluation enables clinicians to capture authentic patient-reported parameters such as subtle symptoms, changes in function and multiple dimensions of well-being, directly from the source. These data guide the treatment course by encouraging shared decision-making between the patient and clinicians and provide the necessary foundation for ongoing peri-operative quality improvement efforts. Elements of the gynaecological oncology enhanced recovery pathway are divided into five phases of care: pre-admission; pre-operative; intra-operative; postoperative; and post-discharge. The development process starts with detailing each step of the patient's journey in all five phases, then identifying stakeholder groups responsible for care at each of these phases and assembling a multidisciplinary team including: gynaecologists; anaesthetists; nurses; nutritionists; physical therapists; and others, to provide input into the institutional pathway. To practically integrate patient-reported outcomes into an enhanced recovery pathway, a validated measurement tool should be incorporated into the peri-operative workflow. The ideal tool should be concise to facilitate longitudinal assessments by the clinical staff.     

Shared decision-making during surgical consultation for gallstones at a safety-net hospital

Background

Understanding patient perspectives regarding shared decision-making is crucial to providing informed, patient-centered care. Little is known about perceptions of vulnerable patients regarding shared decision-making during surgical consultation. The purpose of this study was to evaluate whether a validated tool reflects perceptions of shared decision-making accurately among patients seeking surgical consultation for gallstones at a safety-net hospital.

ICU患者替代决策者决策疲劳现象学研究

目的 分析ICU患者替代决策者的决策疲劳体验，为医护人员实施决策辅助提供参考。方法 采用目的抽样法，对12名ICU患者替代决策者进行半结构式访谈, 采用Colaizzi分析法进行资料分析及主题提炼。结果 ICU患者替代决策者存在决策疲劳，可归纳为5个主题：决策能力有限，负性情绪加剧，决策过程中的困境，决策过程中的冲突和决策支持资源不足。结论 ICU患者替代决策者者面临决策疲劳，医护人员应针对替代决策者决策疲劳采取干预措施，以推进决策辅助支持及共享决策的实施，提高决策质量，改善患者结局。     

Developing an Educational and Decision Support Tool for Stage I Lung Cancer Using Decision Science

BackgroundGuidelines recommend shared decision-making about treatment options for high-risk, operable stage I lung cancer. Patient decision aids can facilitate shared decision-making; however, their development, implementation, and evaluation in routine clinical practice presents numerous challenges and opportunities.MethodsThe purpose of this review is to reflect on the process of tool development; identify the challenges associated with meeting the needs of patients, clinicians from multiple disciplines, and institutional workflow during implementation; and propose recommendations for future clinicians who wish to develop, refine, or implement similar tools into routine care.ResultsIn this review, we: (1) discuss guidelines for decision aid development; (2) describe how we applied those to create an education and decision support tool for patients with clinical stage I lung cancer deciding between radiation therapy and surgical resection; and (3) highlight challenges in implementing and evaluating the tool.ConclusionsWe provide recommendations for those seeking to develop, refine, or implement similar tools into routine care.     

Role of decision aids in orthopaedic surgery

Medical treatment of patients inherently entails the risk of undesired complication or side effects. It is essential to inform the patient about the expected outcomes, but also the possible undesired outcomes. The patients preference and values regarding the potential outcomes should be involved in the decision making process. Even though many orthopaedic surgeons are positive towards shared decision-making, it is minimally introduced in the orthopaedic daily practice and decision-making is still mostly physician based. Decision aids are designed to support the physician and patient in the shared- decision-making process. By using decision aids, patients can learn more about their condition and treatment options in advance to the decision-making. This will reduce decisional conflict and improve participation and satisfaction.     

护理人员对护患共享决策实践认知的质性研究

目的了解护理人员对护患共享决策实践的认知,为促进高质量护患共享决策实践提供参考。方法采用质性研究中的现象学研究法,对4所三甲医院的20名护士进行半结构式深度访谈,采用Colaizzi 7步分析法对资料进行整理分析。结果共提炼出4个主题及所属的10个亚主题:对护患共享决策实践的态度(肯定认同、疑惑犹豫),实践过程的认知(实施顺畅、实施困难),实践中的障碍因素(护士自我效能不足、患者支持系统缺乏、共享决策支持系统不完善)和对实践的建议(提供护患双方情感支持、提升专业素养、完善决策管理支持系统)。结论护理人员对护患共享决策秉持积极的认知观并发挥主动引导参与的作用,在实践过程中面对一定的现实阻力和困境。各级管理者需关注并优化决策支持系统和完善实践模式,以促进护患共享决策高效实施。     

Communicating prognosis in the dialysis consent process: a patient-centered, guideline-supported approach

Recent guidelines recommend shared decision making between patients and nephrologists as the model for dialysis decision making. A key component of this shared decision making is obtaining informed consent. As part of this process, nephrologists have an obligation to inform patients with chronic kidney disease of their prognosis. Ideally, patients themselves should be involved in the decision-making process; however, some patients will not possess decision-making capacity, and others may be unwilling to participate. Determining what to tell patients about prognosis requires tailoring the conversation to the individual patient's preferences. Conversations about prognosis need to occur in a timely fashion so that patients have the opportunity to consider options and make decisions before dialysis is inevitable. Communication strategies are available to assist nephrologists in breaking the bad news of the need for dialysis and its associated burdens. The approach described in this article should help nephrologists discuss prognosis with their patients in a way that is patient centered and in accordance with clinical practice guideline recommendations.     

Shared decision-making in peri-operative medicine: a narrative review

This review on shared decision-making comes at a time when international healthcare policy, domestic law and patient expectation demand a bringing-together of the patient's values and preferences with the physician's expertise to determine the best bespoke care package for the individual. Despite robust guidance in terms of consent, the anaesthetic community have lagged behind in terms of embracing the patient-focused rather than doctor-focused aspects of shared decision-making. For many, confusion has arisen due to a conflation of informed consent, risk assessment, decision aids and shared decision-making. Although they may well be linked, they are discrete entities. The obstacles to delivering shared decision-making are many. Lack of time is the most widely cited barrier from the perspective of physicians across specialties, with little time available to the anaesthetist at the day-of-surgery pre-operative visit. A more natural place to start the process may be the pre-operative assessment clinic, especially for the ‘high-risk’ patient. Yet shared decision-making is for all, even the ‘low-risk’ patient. Another barrier is the flow and the focus of the typical anaesthetic consultation; the truncated format presents the danger of a cursory, ‘time-efficient’ and mechanical process as the anaesthetist assesses risk and determines the safest anaesthetic. As patients have already decided to proceed with therapy or investigation and may be more concerned about the surgery than the anaesthesia, it is often assumed they will accept whatever anaesthetic is offered and defer to the clinician's expertise – without discussion. Furthermore, shared decision-making does not stop at time of anaesthesia for the peri-operative physician. It continues until discharge and requires the anaesthetist to engage in shared decision-making for prescribing and deprescribing peri-operative medicines.     

Shared decision-making for the management of small renal masses: Development and acceptability testing of a novel patient decision aid

IntroductionShared decision-making incorporates patients’ values and preferences to achieve high-quality decisions. The objective of this study was to develop an acceptable patient decision aid to facilitate shared decision-making for the management of small renal masses (SRMs).MethodsThe International Patient Decision Aids Standards were used to guide an evidence-based development process. Management options included active surveillance, thermal ablation, partial nephrectomy, and radical nephrectomy. A literature review was performed to provide incidence rates for outcomes of each option. Once a prototype was complete, alpha-testing was performed using a 10-question survey to assess acceptability with patients, patient advocates, urologists, and methodological experts. The primary outcome was acceptability of the decision aid.ResultsA novel patient decision aid was created to facilitate shared decision-making for the management of SRMs. Acceptability testing was performed with 20 patients, 10 urologists, two patient advocates, and one methodological expert. Responders indicated the decision aid was appropriate in length (82%, 27/33), well-balanced (82%, 27/33), and had language that was easy to follow (94%, 31/33). All patient responders felt the decision aid would have been helpful during their consultation and would recommend the decision aid for future patients (100%, 20/20). Most urologists reported they intend to use the decision aid (90%, 9/10).ConclusionsA novel patient decision aid was created to facilitate shared decision-making for management of SRMs. This clinical tool was acceptable with patients, patient advocates, and urologists and is freely available at: https://decisionaid.ohri.ca/decaids.html.     

Editorial Commentary: Delivering the PROMIS for Patients With Shoulder Disorders—Fool’s Gold,a Mirage,or an Oasis

Comparative psychometric performance of Patient-Reported Outcome Measurement Information System (PROMIS) instruments to legacy patient-reported outcomes for shoulder disorders is relevant and timely, as numerous stakeholders are engaged in the process of capturing, comparing, and evaluating performance results at the individual and population health levels. Depending on the stakeholder type, patient-reported outcomes could be used for clinical research, reimbursement, point-of-care, or benchmarking for patient comparison with a matched population cohort or comparative surgeon scorecard. Identifying and using the appropriate patient-reported outcome measure may be dependent on the purpose for measurement and stakeholder engagement and, as such, could be considered fool’s gold, a mirage, or an oasis. At this time, PROMIS instruments are not a suitable replacement for legacy patient-reported outcomes when orthopaedic surgeons are looking to perform level I and level II clinical studies to develop future clinical practice guidelines grounded in strong evidence.     

Surgeon-Level Variation in Patients’ Appraisals of Their Breast Cancer Treatment Experiences

Background and Purpose

While variation in breast cancer quality indicators has been studied, to date there have been no studies examining the degree of surgeon-level variation in patient-reported outcomes. The purpose of this study is to examine surgeon-level variation in patient appraisals of their breast cancer care experiences.

Methods

Survey responses and clinical data from breast cancer patients reported to Detroit and Los Angeles Surveillance, Epidemiology and End Results registries from 6/2005 to 2/2007 were merged with attending surgeon surveys (1,780 patients, 291 surgeons). Primary outcomes were patient reports of access to care, care coordination, and decision satisfaction. Random-effects models examined variation due to individual surgeons for these three outcomes.

Results

Mean values on each patient-reported outcome scale were high. The amount of variation attributable to individual surgeons in the unconditional models was low to modest: 5.4 % for access to care, 3.3 % for care coordination, and 7.5 % for decision satisfaction. Few factors were independently associated with patient reports of better access to or coordination of care, but less-acculturated Latina patients had lower decision satisfaction.

Conclusions

Patients reported generally positive experiences with their breast cancer treatment, though we found disparities in decision satisfaction. Individual surgeons did not substantively explain the variation in any of the patient-reported outcomes.     

Prospective pilot study of living kidney donor decision-making and outcomes

In its recent report on organ donation, the Institute of Medicine has recommended rigorous studies of how living organ donors make the decision to donate. In this pilot study, 65 donor applicants were interviewed while being evaluated in the outpatient donor clinic and 20 were surveyed again three months after donation. Fifteen and six of these subjects were surveyed again in six and 12 months respectively. Several strategies for retaining donors in a prospective longitudinal study are discussed. Half of the donors indicated that the decision to donate was a shared family decision. Married donors were slightly more likely than non-married donors to involve another family member in this decision. Several donors made practical recommendations for improved education of donors during what many perceived to be a very lengthy evaluation process. Some subjects recommended more discussion about post-operative pain and the expected pace of recovery after discharge. Others spoke of the challenge of completing basic homemaking tasks when the donor and recipient were in the same nuclear family. We are continuing to explore these and other aspects of donor decision-making and outcomes and have expanded our sample to include non-donors in the post-evaluation period.     

A systematic review of decision aids for patients making a decision about treatment for early breast cancer

Several complex treatment decisions may be offered to women with early stage breast cancer, about a range of treatments from different modalities including surgery, radiotherapy, and endocrine and chemotherapy. Decision aids can facilitate shared decision-making and improve decision-related outcomes. We aimed to systematically identify, describe and appraise the literature on treatment decision aids for women with early breast cancer, synthesise the data and identify breast cancer decisions that lack a decision aid.A prospectively developed search strategy was applied to MEDLINE, the Cochrane databases, EMBASE, PsycINFO, Web of Science and abstract databases from major conferences. Data were extracted into a pre-piloted form. Quality and risk of bias were measured using Qualsyst criteria. Results were synthesised into narrative format.Thirty-three eligible articles were identified, evaluating 23 individual treatment decision aids, comprising 13 randomised controlled trial reports, seven non-randomised comparative studies, eight single-arm pre-post studies and five cross-sectional studies. The decisions addressed by these decision aids were: breast conserving surgery versus mastectomy (+/− reconstruction); use of chemotherapy and/or endocrine therapy; radiotherapy; and fertility preservation. Outcome measures were heterogeneous, precluding meta-analysis. Decisional conflict decreased, and knowledge and satisfaction increased, without any change in anxiety or depression, in most studies. No studies were identified that evaluated decision aids for neoadjuvant systemic therapy, or contralateral prophylactic mastectomy.Decision aids are available and improved decision-related outcomes for many breast cancer treatment decisions including surgery, radiotherapy, and endocrine and chemotherapy. Decision aids for neoadjuvant systemic therapy and contralateral prophylactic mastectomy could not be found, and may be warranted.     

Patient decision aids in joint replacement surgery: a literature review and an opinion survey of consultant orthopaedic surgeons

INTRODUCTION

Patient decision aids could facilitate shared decision-making in joint replacement surgery. However, patient decision aids are not routinely used in this setting.

METHODS

With a view to developing a patient decision aid for UK hip/knee joint replacement practice, we undertook a systematic search of the literature for evidence on the use of shared decision-making and patient decision aids in orthopaedics, and a national survey of consultant orthopaedic surgeons on the potential acceptability and feasibility of patient decision aids.

RESULTS

We found little published evidence regarding shared decision-making or patient decision aids in orthopaedics. In the survey, 362 of 639 (57%) randomly selected consultant orthopaedic surgeons responded. Respondents appear representative of consultant orthopaedic surgeons in the UK. Of 272 valid responses, 79% (95% CI, 73–85%) thought patient decision aids a good or excellent idea. There was consensus on the potential helpfulness of patient decision aids and core content. A booklet to take home was the preferred medium/practice model.

CONCLUSIONS

Despite the increased emphasis on patient involvement in decision-making, there is little evidence in the medical literature relating to shared decision-making or the use of patient decision aids in orthopaedic surgery. Further research in this area of clinical practice is required. Our survey shows that consultant orthopaedic surgeons in the UK are generally positive about the use of patient decision aids for joint replacement surgery. Survey results could inform future development of patient decision aids for joint replacement practice in the UK.     

Measuring patient outcomes: a primer

When designing a study, it is important to select appropriate instruments to measure health outcomes. An investigator must have a comprehensive understanding of the disease and its effects on patient health to inform instrument selection. We provide a brief introduction of different ways that health is defined and the properties of a good measurement tool (reliability, validity, sensitivity to change). We describe patient-reported outcomes (PROs) and methods to improve their interpretability, and we include strategies to reduce bias in health measurement and considerations that may improve the feasibility of measuring outcomes in a research study.     

A decision-making learning and assessment tool in laparoscopic cholecystectomy

Aims  Making correct decisions is an integral part of surgical competency and excellence. The learning of this expert skill takes years to accumulate during training. To date there has not been an attempt to accelerate this learning process by developing a tool. In our present study we develop a self-appraisal computer software learning and assessment decision-making tool for laparoscopic surgery. It aims to accumulate several years of varied surgical experience, so the trainee can start to learn the complexities of surgical decision making in various types of cases. In this study we aim to validate the tool. Methods  Three decision-making modules were developed in a computer program for laparoscopic cholecystectomy: knowledge of operation, operative surgical technique and operative task completion. The latter two modules were based on answering questions based on watching recorded live operations from a library of 100 recorded laparoscopic cholecystectomies of various grades. The questions were devised by two experienced surgeons with more than 14 years postgraduate surgical experience. To validate the tool two groups with varying surgical experience were assessed: intermediate and expert surgeons. These groups were determined by the number of laparoscopic cholecystectomies performed as well as of number of years of operative surgical experience. Results  A total of 20 subjects were assessed, 12 intermediate and 8 experts surgeons. Mean time to perform the programme was 21 min (range 18–45 min). Using the Mann–Whitney test, p < 0.05, construct validity was demonstrated in the surgical technique and completion of task modules as well as the total combined scores. Conclusions  Our computer-based decision-making learning tool for laparoscopic cholecystectomy seems to have face, content, concurrent and construct validities. Surgical decision making is a multifaceted process; by assessing how and why decisions are made effectively, focussed surgical training may be achieved. We aim in the future to determine if the self-appraisal decision-making tool improves or accelerates surgical training.     

Counselling the Prostate Cancer Patient

ContextPatient involvement in the medical decision-making process has gained a good deal of importance during the last decades. It has become widely accepted that patient values and preferences should also be considered during treatment selection when reasonable alternatives are available.ObjectiveThis paper discusses the process of shared medical decision making and the importance of informing the patient and improving patient–physician communication concerning prostate cancer (PCa).Evidence acquisitionDuring a satellite symposium at the European Association of Urology (EAU) 2008 annual meeting, the issue of shared medical decision making in PCa was presented. This paper discusses the most important messages of this presentation, supported by recent findings in the literature.Evidence synthesisIn clinical situations where data do not clearly differentiate the treatment alternatives, patient involvement in the medical decision-making process becomes critical. Therefore, patient–physician communication should be emphasised, and physicians should take the time necessary to inform the patient about potential treatment options and their expected consequences. Increasing a patient’s ability to engage physicians in a dialogue and providing patients with balanced information will contribute to a well-considered decision, which in turn can minimise future regret. Misleading information on the Internet and poor literacy skills can hamper the decision-making process. Patients are often dissatisfied with inadequate time spent during physician visits and the not-uncommon perception that treatment choices the physician presents are more restricted than optimal.ConclusionsIn current clinical practice, the patient–physician dialogue should be enhanced, and patients’ preferences should be taken into consideration in the decision-making process. This will contribute to well-considered treatment decisions and improve patient satisfaction.